On Sunday, March 1, 2015, the Bay Area disability community gathered at the Ed Roberts Campus to remember and mourn the deaths of disabled people at the hands of their parents, caregivers or care providers or by law enforcement and other authorities.
This event, the Disability Day of Mourning, is in its fifth year with similar local events taking place in cities across the US and internationally.
For more information about the Bay Area Day of Mourning including the program, action steps and complete list of names recited, go here:
Below is the full-text of the speech by one of the speakers at the event, Alice Wong.
Hi, my name is Alice Wong and I am the founder and project coordinator of the Disability Visibility Project. One of the aims of our project is to record the stories of people with disabilities by people with disabilities…in their own words and on their own terms.
Why is this important? Related to this day, it’s because our lives are so easily forgotten, ignored and excluded. When we are alive, we have to fight for recognition and in death our lives are cast in stereotypes and clichés that robs us of our innate humanity.
I’d like to say a few words and remember the lives of Ben, Max, and Olivia Clarence, three disabled children murdered by their mother, Tania Clarence, on April 22, 2014 in London.
With her husband and non-disabled daughter out of town, Tania Clarence suffocated her three children and then tried to kill herself. She said she could “see no hope for the future” of her children and felt that their quality of life was more important that the length of their lives.
While Tania Clarence admitted to killing Ben, Max, and Olivia at home, she denied murdering them. The charges of murder were dropped in exchange for a guilty plea to manslaughter on the grounds of diminished responsibility.
In the words of the prosecutor: “It is clear on the evidence Mrs. Clarence killed her three children because she wanted to end their suffering and at the time she committed the act she could not see any alternative or any other way out of their joint suffering.”
When I learned about this case, it hit me hard in the gut. You see, I have the same disability as Ben, Max, and Olivia: spinal muscular atrophy. The press on this case described SMA as a ‘muscle wasting’ disease. In the media, words like ‘abnormalities,’ ‘suffering,’ ‘deformities,’ and ‘life-limiting’ are used to describe this condition that is my lived experience while failing to mention the impact of social support, adequate services and disability pride.
In another world, in another set of conditions, with another set of parents, that could have easily been me. If I could speak to Ben, Max, and Olivia, I would say something like this:
Yes, you needed total help with your personal care.
Yes, your muscles were going to continually become weaker over time.
Yes, most people considered you vulnerable and “wasting away.”
But you know what? I bet you also knew how to have fun, enjoy life, and dream big.
I wish that people didn’t think that you were trapped in your body, powerless and filled with suffering.
I wish that the three of you lived until you were old enough to use a computer so we could connect.
I wish my disabled friends and I could have welcomed you to this funky global crip tribe and mentor you in whatever ways you wanted.
As a fellow disabled kindred spirit, please know this:
Even in death,
You are not alone.
You are valued.
You are remembered.
You are loved.
Ben, Max, and Olivia will never have a chance to write their own futures, to make their decisions and become their actualized selves whether they lived to 15, 45 or 80. Their mother robbed them of that choice because of her evaluation of their quality of life and societal worth. Tania Clarence got a plea bargain for what I believe is a hate crime and genocide.
And it is because of the murder of Ben, Max, Olivia and countless other children and adults with disabilities at the hands of their parents, guardians or care providers that I’m here at this vigil to honor the dead and fight like hell for the living.
In a blog post about the ADA last year, Autistic activist Amy Sequenzia said the following: “After 25 years we still fight for access, equality and opportunity. We still need to remind non-disabled people, and the media, of our humanity.”
I’d like to imagine a time when disabled people do not have to prove their humanity and defend their right to exist. So much work remains and it is up to all of us to claw and lash out at our ableist oppressors, in all of its insidious forms. We are here. We will not forget.
Alice Wong is a Staff Research Associate at the Community Living Policy Center at the University of California, San Francisco and a Council Member of the National Council on Disability. She is also the Founder and Project Coordinator of the Disability Visibility Project. Follow Alice on twitter: @SFdirewolf